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Author Topic:   Social Security Disability
Chandra
Member

Posts: 668
From:Beaverton, OR
Registered: Nov 2000

posted April 24, 2003 10:36 AM     Click Here to See the Profile for Chandra     Edit/Delete Message   Reply w/Quote
Have any of you with ichthyosis applied for social security disability before? I'm starting the process and am wondering if there's anything that would help me through the process that you're aware of.

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yangm316
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Posts: 25
From:sheboygan, WI, USA
Registered: Oct 2002

posted April 24, 2003 11:16 PM     Click Here to See the Profile for yangm316   Click Here to Email yangm316     Edit/Delete Message   Reply w/Quote
we applied for Miah and we were denied. We apealed and we were denied again. Now we are waiting for a hearing. The process is long, but Miah is a child so it might be different for adults.

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R
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Posts: 218
From:
Registered: Feb 2003

posted April 25, 2003 04:39 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
I'm currently on SSI. It took being homeless to get it though and I only get about 540 dollars and that amounts to about 5 dollars a day to live off of after rent. Medicare doesnt pay for treatment either.

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Keith Charsha
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Posts: 466
From:Southern California U.S.A.
Registered: Aug 2000

posted April 25, 2003 10:34 AM     Click Here to See the Profile for Keith Charsha   Click Here to Email Keith Charsha     Edit/Delete Message   Reply w/Quote
Chandra,
I applied for social security disability listing 3 different medical conditions, Ichthyosis, Epilepsy and Osteoarthritis. After going to the scariest neighborhood for my interviews and going to the most disgusting doctors evaluation office I've ever been in I was flat out denied. I even had 4 different doctors fill out forms for me explaining my conditions. I am now waiting for an administrative law hearing where I get to go before a judge and plead my case. It's very upsetting to go to the Social Security office and see people on crutches or canes etc., picking up their checks and the minute they get out the door and into the parking lot they seem to have lost their limp or don't need their walker anymore. I've worked all my life since I was 16, never been on unemployment, welfare or any assistance at all. 20 years later after paying into the ssi fund all my working days, I can't take the pain anymore and I can't take pain killers because of my epilepsy and they still denied me. I'm not sure if Oregon has state disability like California does, if so, that is a good place to start for assistance. One thing you can expect from social security is to be denied your first time around, after that get a lawyer, social security will even give you a list of lawyers that handle these kinds of cases. The lawyer is going to send you a form to take to your doctor to fill out that says you are permanently disabled. I can't tell you anymore then that because that is the stage I am at right now. I'm going to send you an email in a minute with some other info.
Keith.

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R
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Posts: 218
From:
Registered: Feb 2003

posted April 26, 2003 07:15 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
I really don't want to live in hellish poverty plus having a disease for any longer and I don't really recommend you try out for SSI unless you're near retirement.

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R
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Posts: 218
From:
Registered: Feb 2003

posted April 26, 2003 08:13 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
Also Chandra I have to say that oregon doesn't have any state disability benefits and will only give you the minimum of what the current poverty level is which is about 540 dollars for a single income home with no family. California does have state disability benefits and adds about 200-300 dollars per check.

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R
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Posts: 218
From:
Registered: Feb 2003

posted April 26, 2003 08:34 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
I have to reply once again to this thread because it has been my life for the past two years. I was working a full time job and found I couldnt do it anymore after employees were abusive towards me and the fact I could barely move after the day and couldn't really function at work. I left my job and ended up having to live in a low income disability housing situation in california with violent schitzophrenics and people who couldn't even function enough to talk and I wasn't really used to that situation so I tried to avoid it as much as possibly and was eventually let away from the housing program because I didn't wan't to take any part in it so I ended up living in my car and eventually because I had a good theropist who also worked for the state was accepted for SSI the first time I applied for it. IF I could go back though I would have kept with my job and tried to stick it out. SSI will be on my permanent record now and I doubt I can ever live a normal life again. I'm a young guy at 21 and I don't really know where my life is taking me. I don't want to wake up everyday thinking that all my life amounts too is a cup of ramen a day.

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Chandra
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Posts: 668
From:Beaverton, OR
Registered: Nov 2000

posted April 26, 2003 08:41 PM     Click Here to See the Profile for Chandra     Edit/Delete Message   Reply w/Quote
I have been told by folks on soc sec disabilty that I can expect to be denied twice, and if I work with an attorney on the third try, it's much more likely I'll get approved. The reason one should wait untiil the third try is that soc security backdates your benefits from the time you first apply, and most attorneys who handle soc sec cases will then take a percentage of that back pay, costing you nothing out of pocket.

I applied for it years ago and was rejected, but I was on disability insurance from my employer and anticipated going back to work (which I did) so I wasn't upset that it was denied since I had a source of income at that time. I am not in as dire straits as it sounds like you have been, R. I am very lucky to also have a family that helps me out financially when they are able, and who always will open their home if my husband and I need a place to stay. Plus, my husband is able bodied and a hard worker and has always been supportive of me in all things, including my applying for disability.

I also know that there were at one time (and may still be) vocational rehab programs for people to be able to get off social security disability. In the past, I heard of people even having a 4 year degree paid for. I don't know if that is still available but it might be worth folks looking into. I know I will be looking into it if I can get my health to improve and stay improved for at least a year if not longer.

The job I currently have is great, and I feel if I were healthy, that I could work the job. But my health has been going downhill for about 7 years now and I don't think things will improve unless I stay home for a good amount of time. I only work 20 hours a week and by the time I've worked 12 hours over 3 days, I am sick, and am exhausted and in pain. Working 20 hours a week leaves me unable to do anything around the house, let alone do something on my days off other than sleep and care for my skin.

I really hope I won't be on disability for the rest of my life, but I won't know unless I get healthy and then try to work again. I do know that social security does work with folks who want to try to go back to work in that how much you recieve will vary according to how much you earn if you go back to work. I think the plan is that your earnings are evaluated each month to determine how much social security will give you, and if you are able to earn more than what soc sec gives you for something like 6 months to a year, then they cancel your benefits. I'm also under the impression that if at some point you've been on social security and then went off because you could work, getting back on it again is not as difficult. At least, this was how it was in 1997. The hardest part is just getting social security in the first place.

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Promiseland
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Posts: 394
From:
Registered: Feb 2003

posted April 29, 2003 05:06 PM     Click Here to See the Profile for Promiseland     Edit/Delete Message   Reply w/Quote
R,

If I recall from your prior postings, you mentioned that you left home at 16, went through a period of homelessness, and is now collecting meager social security disability. If I am not mistaken, you said you had Vulgaris?

If I may ask some personal questions, did you leave home partly because of the inability of your family to deal with your case of ichthyosis? Do you have a particular severe case of vulgaris which your family and extended family could not understand, even if vulgaris is prevalent in the extended family (as it should be, if it is vulgaris)? If your ichthyosis is rather unique in your extended family, you may not have vulgaris, but have one of the rarer forms. Does your condition change much with the seasons? If you have vulgaris, it should change a lot. And if you actually have one of the rarer forms, your claim for disability would be stronger.

What is your relationship with your family now?

Also, if you left home and school early and is now struggling, you may want to think seriously about finishing high school and going to college. It seems to me that this is your best option for both the short and long run.

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R
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Posts: 218
From:
Registered: Feb 2003

posted April 29, 2003 08:30 PM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
Hello Promiseland. I left home because of my families inability to cope with there own lives let alone pay attention to mine. My dad divorced my mom when I was 14 and moved off to start a new family and my mom ended up turning into an alcoholic and brought different men home everynight and I couldn't really handle that situation. I was living in a two bedroom apartment with 4 different people I didnt have my own room or anything. I don't speak to my family much these days and live on my own. I went to a dermatologist a couple of years ago and he said I have either vulgaris or x-linked. when I was a kid I would get very dark thick scales on my legs and now I just get the thinner white scales. I dont get scaling in the folds of my legs or arms but I do everywhere else. No one in my family has anything like what I have but my brother and father have bad dandruff and get flaking on there faces. I saw some pictures of myself right after I was born and my skin was almost like large sheets of dry skin and normal but blotchy skin underneath. I never really mentioned that my skin gave me problems as a kid because my parents were't really close to us and I regret that now but don't think it would have made much of a difference. I got a GED when I was 17 and I have thought about going to college but I get very agoraphobic around large groups of people and it stresses me out alot. It does change alot season to season but for the past few years it have been moderately severe and I think that could be attributed to alot of stress perhaps. It is strange to me that no one else in my family has it but I am not sure if it is one of the rarer forms. I also should mention me dads new son had some scaling on his legs but not the large sheets of peeling dry skin I had when I was born. Sorry for the long reply.

[This message has been edited by R (edited April 29, 2003).]

[This message has been edited by R (edited April 29, 2003).]

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Promiseland
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Posts: 394
From:
Registered: Feb 2003

posted April 30, 2003 12:03 AM     Click Here to See the Profile for Promiseland     Edit/Delete Message   Reply w/Quote
R,

I highly recommend that you see other dermatolgists (resources permitting) for other opinions. If you were a "collodian baby," it does not sound like you have vulgaris. That seems to apply more to one of the rarer cases. Check the FIRST website and other sources.

In your 20s, you really do need to think about college, and studing a marketable subject and major. A college degree is not indispensable to a happy life and lucrative career, but it gives you the best chance for financial well-being. Life is tough enough as it is and will be with whatever type of ichthyosis you may have. Whether you go to school or work now, you have to deal with people and the stress that comes with it.

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R
Member

Posts: 218
From:
Registered: Feb 2003

posted April 30, 2003 12:40 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
I don't think I was born a collodion baby because I didn't look as severe as the pictures i've seen of babies that are concidered collodion. The only thing I remember my mom saying that was odd about my birth was that I was born a couple weeks late and had long hair and nails. In some pictures of me as a little kid my skin looks as healthy as normal skin wearing a tanktop and short shorts. It used to really clear up in the summer. It's really strange because now my skin is very severe almost year round and just gets even worse in the winter and has caused a scarring like effect on my whole body. I can take care of the scaling after a few days or weeks but I can't do anything about how the skin looks like old man skin. I've tried everything as far as diet and health are concerned such as being vegan for 2 years and excercise and nothing has been very effective. I think I will look into college and see what SSI recipiants are entitled too as far as that goes. If I have to take vocational classes for reminial work though I am not really interested and can't afford to pay for college myself. I have other health problems besides ichthyoisis like a hiatal hernia or stomach problem that causes me a great amount of pain that comes on for no apparent reason at erradic times and when working I get very sick very easily because the quick schedule is to much for me. As a kid I missed alot of school and my mom actually took me out of school for a year because I was constantly sick.

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Promiseland
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Posts: 394
From:
Registered: Feb 2003

posted April 30, 2003 07:30 PM     Click Here to See the Profile for Promiseland     Edit/Delete Message   Reply w/Quote
R,

You shouldn't have to worry about funds to pay for school. That should be the least of your worries contemplating going back to school. Needy students can get financial aid with no problems.

Your biggest hurdle would be two things: how ready you are in terms preparations, and how much you want it. The best thing to do would be to check out what local community colleges have to offer in terms of remedial work. This would be perfect for you to "test your waters."

If you were serious about embarking on a college education, I sincerely urge you to stay away from majoring in the humanities or the social sciences (unless you plan to go to law school). You can find jobs with Business Admin degree. Engineering would be most marketable. Good luck.

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Les Avakian
Moderator

Posts: 474
From:Fresno, Calif. USA 93705
Registered: Aug 2000

posted April 30, 2003 07:38 PM     Click Here to See the Profile for Les Avakian   Click Here to Email Les Avakian     Edit/Delete Message   Reply w/Quote
Hello R
I just read your comments and thought I would respond. From what you explained, I share some of the experiences you had as a newborn and child.As for my late arrival and long labor my mother had to endure, it can be understood because of the placental sulphatase enzyme deficiency syndrome found in X linked babies.For some reason, in some cases, it inhibits the beginning and/or progression of labor.After four days of labor, the doctors finally delivered me caesarean section.Also as a child, I caught every cold and flu imaginable and many school days were missed.I dont know if there is a link between X linked and a weakened immune system for colds and flus.R if you have the time, contact the National Registry for Ichthyosis at the University of Washington.Their number is 1-800-595-1265.Contact Geoff Hamill or Kim Pineda and they can help you join the registry.Also your derm would be able to take a simple blood sample. In X linked ich people, we have an abnormally high level of cholesterol sulphate.I am not sure if you have x linked, but at least you can rule it out with a simple blood test. Take care R and I hope this helps.
Your central cal ich friend,
Les

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mary bellucci
Member

Posts: 65
From:Edinboro, Pa. USA
Registered: Sep 2000

posted April 30, 2003 11:31 PM     Click Here to See the Profile for mary bellucci   Click Here to Email mary bellucci     Edit/Delete Message   Reply w/Quote
R,
I have read your posts and it appears that you have been through more turmoil in your 21 years than most people endure in a lifetime. Your posts should drive home to the rest of us just how important a supportive family is to a person with ichthyosis. It does not sound as if you have had that support and I think, above all else, that is the biggest hurdle you have had to overcome. You write very well and seem to be a very intelligent person with alot to offer. I think you are selling yourself short. You need to do alot of soul searching and really start to think about what your dreams are and what you want out of life. Zero in on something and don't let anyone or anything stop you. As you have stated you have some physical limitations, but start concentrating on what you CAN do, and not what you cannot. I know it sounds easier said than done, but once you make some decisions and get the ball rolling it will just get easier and easier. I can tell by your postings that you are smart, self sufficient, caring, mature, and above all a survivor who does what he has to do to take care of himself. You have alot more going for you than alot of people. Do not let life pass you by (forget the ramen noodles- you DESERVE steak!). I have a 17 year old son who has ichthyosis and I know the challenges, but I also know the inner strength you guys have to be able to overcome these challenges. If you ever need an ear you can email me at jwildzza@velocity.net Take care, Mary

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R
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Posts: 218
From:
Registered: Feb 2003

posted May 01, 2003 12:17 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
Thank you all for your supportive posts.

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R
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Posts: 218
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Registered: Feb 2003

posted May 05, 2003 04:36 AM     Click Here to See the Profile for R     Edit/Delete Message   Reply w/Quote
Les, my birth does sound familiar to an x-linked birth but no one on my x-linked (mothers) side has any indication of ichthyosis and only on my father's side do I see flakyness on the face and bad dandruff. I think I may be a spontaneous mutation in the family but I was never really close to my father's family seeing as they lived in scotland and all. Mary, I have been through alot in my life but even living off of 540 dollars a month my life is a luxury to people in other countries that may share my affliction. I am pretty content with my life as it is even if it is pathetic by western standards. I may check into college soon. It's hard figuring life out when you have no parental guidance or support though. Oh well, I hope I can make a decent respectable life without their support.

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AngV
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Posts: 23
From:Sartell, MN
Registered: Nov 2004

posted May 07, 2003 10:17 PM     Click Here to See the Profile for AngV   Click Here to Email AngV     Edit/Delete Message   Reply w/Quote
I just noticed this posting and thought I would respond since I do know something about SSD. When I lived in Virginia I was a paralegal and worked on SSD/SSI cases. I can tell you that about 99% of the cases we saw got denied at the first application. At the appeal (Request for Reconsideration) you should get an attorney at that point. It just makes it easier because about another 60-70% will also get denied at the reconsideration level. (The whole social security system is messes up if you ask me)At the ALJ hearing you definetely should have a lawyer who knows about disability cases and can prepare an accurate and helpful file on you - however, you MUST have a doctor who will state that you are disabled and can not work any job. If you do not have that the chances of winning are slim. I myself never considered filing for disability because, although my EHK is quite extensive, I do not let it stop me from doing what I want to do. I never had a problem getting or keeping a job. My biggest problem is not my skin but having to deal with others perception of me because of my skin. And that has taken me a long time but now I am to the point that if someone does not take the time to get to know the real me (beneath the skin!) then I don't care to know them. Other than my EHK I am totally healthy so I guess on that aspect I am lucky. I hope this info was helpful and let me know if I can help out in any way.

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Chandra
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Posts: 668
From:Beaverton, OR
Registered: Nov 2000

posted May 08, 2003 08:53 AM     Click Here to See the Profile for Chandra     Edit/Delete Message   Reply w/Quote
AngV, thank you, that information was very helpful.

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